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  Information giving and decision making in ante-natal screening
By Joanie Dimivicius

Introduction

What follows is the text of a paper given at a conference organised by Pro-Choice Forum called 'Issues in Pregnancy Counselling: What do Women Need and Want?' The conference was held at Ruskin College, Oxford in May 1997. It's aim was to give students, academics, service providers and others interested in ensuring pregnancy services meet women's needs, the opportunity for a critical discussion of the provision of counselling as part of these services.

Joanie Dimivicius

Support Around Termination for Abnormality (SATFA) is the only national charity which supports parents through antenatal testing, with decision making when an abnormality is diagnosed in their unborn baby and provides continued support to those parents who chose to end the pregnancy. SATFA is a non-directive charity, there to help parents arrive at the most appropriate decisions for their family, through the provision of information and support. SATFA is not a counselling organisation.

By the time parents come into the health care system they may have already made or contemplated many changes in their lives. They may have changed their lifestyle; be planning to change where they live; or changing how they live, for example living on a tighter budget. The pregnancy is something in which they have invested time, emotion and perhaps money. Parents may think: 'After two years of trying for a baby we were expecting you. From the moment the doctor said the test was positive you were loved and wanted.' Each pregnancy has its own significance for parents, and health professionals cannot be expected to know its meaning. Bourne and Lewis (1989) suggest that even when pregnancy is passionately desired the impulses and ideas involved are complicated and ambivalent.

For some women their obstetric history will also be crucial to the pregnancy: 'I was overjoyed at being pregnant again and felt at last that I was free of the shadow of a previous miscarriage.' But when the health of the baby is challenged, through the antenatal testing process, it is important for health professionals to try to ascertain and understand the significance of the pregnancy. 'Some of the gravest disturbance comes from the collapse of a system of hopes and values in which the birth of the baby is paramount.' (Lewis and Bourne 1989).

All women are now offered some form of screening in pregnancy, to determine if they are at sufficiently high risk of a particular disorder to warrant a diagnostic procedure such as amniocentesis or chorionic villus sampling. It is very clear that women who have screening or testing in pregnancy seek reassurance: they want to be told everything is okay with their baby, not to be told that there is a problem with the baby. Even those parents who have a genetic disorder which presents as a risk of 1:2 or 1:4 of carrying an affected child in each pregnancy have prenatal diagnosis to confirm the health of their unborn baby.

Farrant (1985) and Green, Snowdon and Statham (1993) have argued that it is important for service providers to appreciate the implications of this: women's need for reassurance versus the health care process which is to diagnose abnormality. This is evidenced in the language for example, 'screen positive' and 'screen negative' which can be a cause of confusion for parents.

No tests should be presented as routine, all women should make an informed decision to opt in to antenatal testing. If this happens and, as part of the pre-test 'counselling' process, it is understood that the purpose of antenatal testing is to detect foetal abnormality then issues such as language and terminology can be discussed and some of the confusion and distress may be avoided.

The task of antenatal screening is to inform people fully about the low probability, but possibility of serious events without alarming them unduly or reassuring them falsely. It is a monumental task which may be easier if broken down into women's need for information, choice and support.

That may sound simple and even obvious but providing sound information, enabling clear choices and providing effective support is a difficult and complex process which requires skills that many staff may not have had the opportunity to develop. Parents need clear, accessible information presented to them in a way which enables them to make choices which are appropriate to them. They need time to assimilate that information, and they need staff who are able to offer them both practical and emotional support.

Antenatal screening and the detection of foetal abnormality is intended to increase the reproductive choices available to women. The consequence of increased choice however is that pregnant women face many difficult and complex decisions.

It is well documented that health professionals underestimate the patient's needs for information and their ability to understand this information (Ley 1988). This may be because health professionals fear that providing too much information will actually make patients anxious. In contrast research shows that information has an anxiety reducing effect or no effect on anxiety.

If a woman is to make informed decisions, for example to opt in to antenatal testing or to have a diagnostic procedure, she will need information which is accurate. She will need information about the condition, about her own prior risk, the practical details of the test, what it involves, what it can detect and what it cannot detect and how when and where results will be given. The meaning of false positives and negatives should be explained, together with the details of what happens next, what choices are available to parents and where they can find further information if that is what they need.

This is a large amount of information which cannot be absorbed in one session. It will take time and there may be a need for follow up consultations if a woman is to be fully informed. Such consultations should be supported by written material as it is inevitable that it cannot all be remembered accurately. Time and skill are required to provide women with all of the information they need to make informed choices about antenatal testing. Even if presented well, screening can set in motion a series of events and choices, which in hindsight some women would rather have avoided.

Many parents will seek information from a variety of sources and therefore information provided to them needs to be consistent. There should be co-ordination between hospitals, GPs and community health workers so that when parents seek information from other health professionals they are not further confused. All staff need to be familiar with the conditions which are to be screened for. Full, detailed knowledge is not necessary for all staff, but familiarity with the condition is. It can only add to the sense of bewilderment and isolation a parents feels when a member of staff says that they have never heard of Edward's syndrome for example, or says to the parent that it is a rare occurrence in their hospital. Whilst this may be so, it is important always to contextualise the information.

A multi-disciplinary team approach is essential. The team may vary but should, at least, comprise midwives, obstetricians, paediatricians, geneticists, surgeons and have access to support and disability organisations. It is very rare that one health professional can meet both the emotional and information needs of parents.

Research by Smith, Shaw and Marteau (1994) shows that often in antenatal screening, information about the practical aspects of the test is emphasised, whereas information about the likelihood and implications of possible results which indicate abnormality is rarely given. Parents feel: 'My 'what ifs' were not acknowledged. Everyone else had the test and a healthy baby.' Many women approach SATFA whilst waiting for the results of amniocentesis. Although distressing, they wish to talk about their options if the baby is diagnosed as having an abnormality: ' What if my baby has Down's syndrome? What will happen? What are my choices? Can I begin to talk about having a termination of pregnancy? What does it involve?'

Health professionals can be reluctant to address these issues with parents. This may be because there is a higher probability of a negative test result than a positive one. 1: 20 of all women who have serum screening will come back as screen positive, of those 1: 70 will have an affected baby. It is difficult talking about the process of a termination to a woman who is 18 weeks pregnant and whose baby is probably unaffected. However, having told a woman that she is of sufficiently high risk of a particular condition to warrant an invasive procedure, with the attendant risk of miscarriage, there is then a duty to provide her with all the information she needs, including addressing sensitive issues such as the means of termination. Providing women with information also provides them with some control.

If information is presented in a way which is non-judgmental, non-directive and clear it will enable parents to make choices which are appropriate to them; for example to have a diagnostic test with its attendant risk of miscarriage of a healthy baby and to continue with or terminate the pregnancy once an abnormality has been diagnosed.

Those present at the Third European Meeting on the Psychosocial Aspects of Genetics (1992) however, voted by a narrow majority that non-directive counselling was not achievable in practice. This is partly because the 'counsellor' comes to the session with her own cultural background, value systems, personality and life experiences. She may have conscious or unconscious views about an appropriate decision and course of action and these may influence her words in describing choices, conditions, tests and probabilities.

Yet just as health professionals bring their own value judgements and life experiences and expectations to the process so do parents; their hopes, expectations and aspirations for the child to be, a past history and a set of beliefs which are relevant to the decision they must make. The role of the 'counsellor' be she midwife, obstetrician, doctor is to be a reliable informer and facilitator who works within the life-plan, hopes and expectations held by the parents.

References

Ley P. (1988) Communicating with Patients, London: Croom Helm.
Lewis E. and Bourne S. (1989) 'Perinatal Death', Balliere's Clinical and Obstetrics and Gynaecology, Vol. 3, No 4, 935-953
Farrant W. (1985) 'Who's for amniocentesis? The politics prenatal screening', in The Sexual Politics of Reproduction, (ed. H Homans), Gower, London
Green J.M., Snowdon C. and Statham, H. (1993) 'Pregnant women's attitudes to abortion and prenatal screening', Journal of Reproductive and Infant Psychology, 11, 3-39
Smith K.D., Shaw R.W. and Marteau T.M. (1994) 'Informed consent to undergo serum screening for Down's syndrome: the gap between policy and practice', BMJ, Vol. 309
 
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